Does anyone personally know Michelle Knox? Because we’d like to be friends with her. We have much to talk about. Listening to this story about her on NPR, we had a classic NPR “driveway moment.” We laughed out loud along with a little bit of car-crying.

We wanted to know more. It turns out that Michelle works in finance in Sydney, Australia. She is a traveler and blogger who lost her father in 2017. Her personal experience in grief and dying motivated her to research how others talk about and prepare for death. She found that it’d be a lot easier to live if we talked about death now while we are healthy.

Listening to her TED talk is a master class in how to talk about death in a straight-forward way while even being funny. She reminded us of what we’ve discussed before about the benefits of planning ahead. There are so many overwhelming decisions to be made when someone dies, as she points out: “coffins, headstones, headstone wording, headstone font size... all while sleep deprived.” It gives our loved ones comfort to know in advance what we would have wanted, and takes some of the burden off them in making the many arrangements. Don’t we all want to give our loved ones that small comfort?

She also uses the term “good death” because her father died as he wished: at home, surrounded by family, peacefully. We’ve written about the concept of a “good death” before. We could relate when Michelle said that it was a privilege and gave her peace to help her father follow his wishes to achieve a good death. We’ve also taken notice of people out there working to change our avoidance culture and help others achieve a good death. There was recently an interesting opinion piece in the New York Times by one of these amazing humans about people’s desire for nature at the end of their lives. Even with all the wonderful people working in palliative care, it still takes some planning on our part: reflect on what you consider a good death, and tell your loved ones, before it’s too late.

We are proud that our sister achieved a good death. We hope for the same for ourselves. Towards that goal, we are writing more of our wishes down. Michelle’s story was a great reminder that we should think through all the details, including wishes for burial and memorial services. She brings up many important considerations like: “Do you want to be near the ocean, or in the ocean?” We believe, as Michelle does, that planning ahead doesn’t need to be scary or sad. In fact, we might make it “fun” by opening a bottle of wine!

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

— Karen Brown

The author, Karen Brown, shares her family’s in-home hospice experience and their best efforts to care for her father who was dying of pancreatic cancer. It is a difficult read as she describes her poor father’s uncontrolled pain, the lack of support from hospice due to staffing shortages and, as a result, their stress as they fumbled through trying to alleviate his pain.

We have discussed the challenges of in-home hospice before, as well as the significant commitment placed on family members, in response to the same Politico article she references. We have also discussed the barriers to hospice enrollment that we experienced, and explained that we wanted the support from hospice and believe that we would have benefited from earlier enrollment, similar to many families who report dissatisfaction when they are referred to hospice too late. Although we are proud that our sister was able to die at home, at peace, and surrounded by family as she wished, we felt uneasy at times without any hospice visit during the last 72 hours of her life.

We relate to the feeling that hospice did not live up to all of its promises. In our past post, we noted that, according to the National Hospice and Palliative Care Organization, “at the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Looking back at this statement, it sets expectations that were not met in either of our experiences. Interestingly, the author reached out to this same trade organization in her piece, and their response was that “good hospice experiences ‘far outweigh’ the negative ones.” Wait, so, the author’s father’s pain crisis during his last hours would not outweigh someone’s nice comments about their primary hospice nurse? Is it acceptable to assign relative weight to a negative hospice experience, or to get it right on average? When we were having our babies, we didn’t hope that our OBs would “mostly” get it right, that the positive birth stories would outweigh the negative ones. Why should it be different for us and our loved ones at the other end of life?

Due to the negative stories that we have heard and read, we wonder if the majority positive responses to surveys about hospice are representative. Perhaps those who were happy with their hospice experience and want to share their gratitude are more likely to respond, while those with negative experiences are too sad to make complaints or answer surveys, just as Karen Brown felt. In any case, we share her perspective that, overall, family caregivers should be better prepared for reality when taking on in-home hospice care. Hospice may not be there, holding your hand and walking you through the end. Therefore, family caregivers should be better trained to handle death independently, and we believe that would lead to better experiences with loved ones in their final moments.

Ultimately, the negative experiences should be unacceptable, no matter the average feedback. We should place value on each individual achieving a “good death.”

We discovered this informative article by Joanne Kenen in Politico thanks to a tweet from Zen Hospice Project, an amazing hospice care provider in the San Francisco Bay Area. The article recognizes both the importance of home hospice and its challenges. The main point that the article addresses is the fact that dying, family structure, and illnesses have changed over the decades, making the traditional model of hospice out of sync. It is a worthwhile read.

The article explains that hospice pushes back against the over-medicalization of death and emphasizes comfort and family. But in today’s world of advanced medical treatment, as we’ve discussed before, it can be difficult to determine “the right time” to enter hospice.

When patients elect hospice, they must usually give up on curing or containing their disease—a difficult decision to make in a system that dangles the promise of a medical fix just within reach. In practice, people often turn to hospice for only a handful of days, at the very end, after using up a lot of expensive high-tech care that may have drawn out death more than it extended life.

— "Hospice in Crisis", Joanne Kenen

Adding to those issues, the care needed during home hospice can be a significant commitment for family members, complicated by the fact that families have changed, living further apart and less likely to be available for full-time caregiving. As we experienced and as the article says, the primary and time consuming care is given by the family. The article’s author writes:

No matter how good and caring the hospice team—nurses, aides, social workers and, as desired, chaplains—much of the work falls to the family. And even when the family is willing and well-equipped, as my own family was as we took care of my father with hospice in the final months of his life, it’s not so easy to die at home.

With an aging Baby Boomer population, this problem needs solutions now. Unfortunately, the solutions are complicated. The article discusses several ideas for changes in payment structures and policies but notes that, as for Washington, “a comprehensive national long-term care program is so challenging economically and politically that hardly anyone in the capital even bothers talking about it.” And while doctors and policy experts have some ideas, the article explains “they are still in the ‘floating ideas’ stage, not agenda items for Congress or the Medicare agency.” We feel optimistic to know that researchers like Joan Teno, whose research on hospice care we’ve reviewed before and who is quoted in the article, are working on these complicated and urgent issues. Unfortunately, clear solutions and ways to pay for those solutions are yet to be determined. While we wait, there are many families currently struggling with caregiving and suffering through less than optimal hospice experiences.

Perhaps what we are most excited about is the article’s discussion of “the relatively new specialty of palliative care.” Palliative care offers a similar philosophy as hospice but does not require patients to give up curative care, like chemotherapy. Some hospices even allow “concurrent care,” which allows patients to start hospice while keeping some regular or palliative care treatments. As we’ve said before, this is a much needed reform. We are also hopeful for reform based on the results of a study described in the article:

Medicare’s Innovation Center is running a multi-year test of that approach for four diseases, including advanced cancer. The idea is that patients who get the symptom management and emotional supports of hospice and palliative care, and who come to better understand their own illness, make different choices.

The idea there being that if patients understand their options and goals better, they can decide if the benefits of drastic treatments will outweigh the risks. This concept reminded us of Lucy Kalanithi’s inspiring Ted Talk. For more on making choices as a patient, by asking “what medical care will help you live the way you want to?”, watch Lucy’s talk here: https://www.ted.com/talks/lucy_kalanithi_what_makes_life_worth_living_in_the_face_of_death

We are hopeful that the ideas posed in this article, such as different payor systems, holistic approaches, technology and telemedicine, will provide better hospice outcomes, including for the caregivers and families involved. At least it seems that there is a movement, a cry for help to try to prevent the “tsunami” that Joan Teno warns is coming. She personally told us “stories move policy” and we wholeheartedly believe her.

As we’ve posted about before, we have a special interest in books about dying, books about grieving, and other such uplifting topics! Actually, we truly admire those that can write about such heavy topics in an honest and even humorous way. Here is a short review of what we’ve been reading lately. Post in the comments section or email us if you’ve read any great books this summer!

Sheryl Sandberg shares her tragic story of losing her husband unexpectedly, leaving her a single parent to their two children. In addition to Sheryl’s experience, this book shares others’ stories of loss and suffering while also finding ways to impart wisdom and inspiration. It somehow digs out the uplifting aspects of grief, sharing how we may become better. We especially liked the discussion of “post traumatic growth” where you move forward in a positive way after loss.

“It is the irony of all ironies to experience tragedy and come out of it feeling more grateful. Since I lost Dave, I have at my fingertips this unbelievable reservoir of sadness….But along that sadness, I have a much deeper appreciation for what I used to take for granted: family, friends, and simply being alive.”

It’s no secret that we are big fans of Emily McDowell, her hilarious cards and other products.We've mentioned this book before, but continue to recommend it to anyone that wants to help a friend in grief or a difficult situation. It may also make a good gift as everyone could benefit from learning to do better in those "don't know what to say" situations.

The authors provide real life scenarios with supportive things to say and do. Beyond practical advice, it is easy to read, funny, and full of of pretty graphics and “empathy tips”. One of our favorites:

“If fix it platitudes are so unhelpful, why are they so common? ….We (our culture) believe in getting things done rather than just letting things be, and we believe that “healing” means getting over rather than learning to live with loss. Our discomfort with suffering, and our rush to make it stop, can result in simpleminded fixes that suggest the problem of grief is an easy one to get over. This superficial effort just makes the suffering person feel even more broken (and pathetic) for suffering at all, and more detached from the person trying to help. For all these reasons, it’s best to avoid look-on-the-bright-side phrases and platitudes. Instead, find out how your friend is feeling about what’s going on. It’s simple: just listen.”

The author tells her story of undergoing breast cancer treatment while losing her mother to cancer, and ultimately losing her own life to her cancer. Although devastatingly sad at times, it is also touching and hilarious, and covers the perspectives of patient, caregiver, and griever. Some of our favorite passages:

“I don’t belong in bed, but I don’t fit in out in the world either. I have a sense of myself as a broken camera – focusing on something out on the horizon (the future, cure, recurrence, death) and then, without warning, zooming in on a blade of grass (what is that weird taste in my mouth… did anyone remember to pack a snack for the kids). And then zooming out to the horizon again, and then back, and then again. I can’t figure out where I’m supposed to point this thing.”

“If there were an exam on the caregiver booklet that hospice gave us… I feel confident that Charlie and I would both ace it. It’s almost midnight. We are sitting at the kitchen counter of our parents’ house, obsessively going over the checklist that attempts to break it down by weeks, days, hours, moments. Preparing for the unpreparable… scanning for something that is not there.”

This book puts concepts that every working mom will recognize into vocabulary terms like “close encounters of the half-insane kind” when a mom gets mistaken for an extraterrestrial by normal humans, or “list paradox” when you make a to-do list to give you a sense of control but there are always more items than can be crossed off. Even though it isn’t about grief or dying, the author keeps it real and keeps us laughing. Caregivers may find it comforting to read about another “half-insane” person or coping skills like “ignore the tray” – meaning rather than focus too much on the load you are carrying, watch where you're headed and everything will be just fine. This book normalizes the chaos of being a working mom. We enjoyed reading that we weren’t alone in feeling overwhelmed and imperfect sometimes- something that we all, including caregivers, need.

Since we are obsessed with home organization, this book can only serve to take our obsession to a new level of crazy. It offers tips room by room in short blurbs and easy to manage projects. Plus the pictures of beautifully organized houses are so pretty!

Did you see this article in Real Simple? It caught our attention with the tag line: “Most people find death too depressing to talk about. But that denial has a huge price, and it’s loved ones left behind who will pay.” Obviously, we kept reading and wanted to share it with you.

We were somewhat prepared for our sister’s death, but there were still questions that came up, as the article suggested. Like, what should we do with her Facebook account? Are there any bills to pay? What are all the accounts that need to be notified and closed? What are her passwords to myriad things? Fortunately, our sister was incredibly organized and she had taken the time for a great deal of thoughtful planning. Yet somehow there were still questions, things none of us thought of in advance. Some unforeseen issues are inevitable, but knowing what to consider and communicate in advance about your wishes and your affairs can save you and your loved ones from much of the stress. Many people who have experienced the death of loved ones will say, as our guest blogger April Koontz did, that “Being prepared to die is the greatest gift you can ever give” and also that you will also reap benefits from doing so.

The article describes services offered by Good to Go, an advanced planning company that helps people get all of the tough questions out of the way. They have private or corporate consultations, parties, or an online option where you can order a “Departure File.” Are you thinking why didn’t we think of this? We are. We especially love how Amy Pickard, founder of Good to Go, makes the planning seem like such a positive step and even enjoyable.

Even though we seem to like to talk about death and dying often, we still have our own work to do. After reading this article, we are reminded that we want to make it easier for those that we leave behind. We will write more things down, review our advance directives, and continue considering and updating our final wishes. Since we love lists and organization, we should be facing this task with the same motivation and find similar satisfaction with the end result. We hope others can do the same.

Recently we have seen some of our favorite topics in prominent journalism and television series: caregiving daughters, end of life care, and death and dying. We took notice and have been thinking about them ever since. The articles have us contemplating how we can make dying better and how caregiving daughters can thrive as part of the American health care force. We have previously talked about why our employers should pay attention to us, strong and successful women who also make kick ass caregivers. But when our loved ones are dying, will medical professionals be able to help us attain a “good death”? These issues pull at our heart strings, because we want caregivers to be supported, especially when faced with orchestrating end of life care.

The recent NY Times article, "We're Bad At Death. Can We Talk?" by Dhruv Khullar suggests that we continue to struggle with the right time to enter into end of life care mode. We agree, as we’ve previously written, it can be full of worry to find the right time to enroll in hospice, not to mention figuring out how to talk about it. It is a bleak reality that there are patients dying who have frequent medical visits, procedures, hospital stays, instead of making plans to live the end of their life as they wish and at their home. Although it was challenging, and we felt unsupported at times, we are proud that our recent experience with the death of our sister would be considered a "good death". She was at home as she wanted, peaceful, and with immediate family surrounding her.

The article states that research shows “physicians die in hospitals at the same rate as everyone else”, but our sister was not going to be one of those statistics. She felt strongly about never being in a hospital again and we were not going to let her down. Just as the article suggests, there is still work to be done - some medical professionals don’t have confidence in how to talk about death, access to palliative and hospice care in certain areas of the country is a problem, overly-aggressive or unnecessary treatments for those dying still happen. And maybe the stress and uncertainty that comes with independently caring for someone dying at home isn’t for everyone. Khullar states that there are differing opinions of what a “good death” means. Indeed, and adhering to the patient’s and family’s wishes is key.

Oprah just shared a spectacular interview with B.J. Miller, a palliative care and hospice physician, where they discuss death and dying. They examine deep subjects such as preparing to die well and spiritual aspects of death, with tough questions from Oprah such as: “What has being around the dying taught you about living?” B.J. Miller’s calm and positive attitude toward death is worth your time. We liked much of what he said, but this particularly resonated with us: “Dying isn’t so pretty….when someone can sit with you and be with you in that state- is an amazing thing to offer someone. To be present. It can heal many wounds.”

So not all are bad at death. Our sister and B.J. Miller can teach us some great lessons - to be realistic, to not be afraid, and to exist in the now.

We tend to write letters if we are passionate about how terrible our travel experience was, or why our senators should listen to us, or reasons that hospice needs reform. In this case, we need to tell Hollywood how they continue to get it wrong when it comes to dying.

Dear Hollywood,

We wanted to raise an issue with you. We don’t mean to criticize, but you need to know that when it comes to dying on TV and in movies, you’ve got it all wrong. We know that this is a tricky subject and you’re trying to create touching stories, but in many cases, we are afraid that you’re misleading people. Plus, the inaccurate picture you’re painting has simply started to rub us the wrong way.

Prior to our experience of watching our sister die from cancer, we were just like many other blissfully unaware people watching things like “The Bucket List” - two old men break out of a cancer ward and go on adventures around the world. Ok, sure.

But more recently, we were watching a popular TV show - "This Is Us" - and couldn’t finish watching the episode. And it’s a great show, stressing the importance of family and siblings. We are fans. But we couldn’t keep watching. In typical Hollywood fashion, one contained in an alternate reality, the man who is dying takes one last road trip with his son, to hit up his old stomping grounds, making last visits to places that he loves.

We couldn’t watch it because it angered us. Dying people are often frail, tired, weak, and, frankly, feeling pretty crappy, so getting in a car to drive hours and hours is not what they want to do, nor do they have the energy for that. Beyond it being unrealistic, it perpetuates the message that those who are dying should do just that and, if they don’t, they have somehow submitted too easily to dying or not lived their life to the fullest.

We felt pressure to do something grand with our sister as she faced the end of her life. A few well-meaning people even suggested that we take a vacation together. (They must have watched "My Sister's Keeper" too often and remembered that ridiculous and impractical beach scene.) But it was not feasible. It also caused us to question how to make the end “meaningful.” Yet, when we look back, we have no regrets. There was meaning there. Despite your portrayal of dying as an adventure-seeking opportunity, a time to plan impromptu trips, we had countless worthwhile moments spent in our PJs on the couch, laughing over a comedy, hugging, crying, and enjoying quality time with our dear sister. Those moments mattered- being together- not time spent trying to coordinate a trip to jump out of a plane.

Why is it that the fantasy of movies features one last gesture, one last big hurrah, one final trip? This concept of a “bucket list” is even a social media craze - there’s a hashtag for it, #bucketlist. We get that anyone wants to feel like they have had adventures and accomplishments, lived a full life, but maybe we can leave the dying out of this? Uncouple the bucket list idea from the end of life stage. Let’s call it something else - maybe a “full life list.” #fulllifelist. Yes, movies and TV are entertainment and showing us the reality of dying is anything but entertaining, but misrepresenting it is not ideal either.

As this article in The Guardian teaches us, a bucket list risks chasing the future and not coping with the reality of the present, or facing death. Psychologist Linda Blair brilliantly explains: "But if you're constantly living in the future, ignoring what's going on right now because you're shooting for goals, which happen so quickly that they're over, and then you have to chase another one, you're not really living." Perhaps your focus in Hollywood should shift toward living life how one wants, pursuing those items on a wish list as an everyday goal, and cherishing and respecting one's relationships. That way we won’t all be panicking to have a final, meaningful moment and we won’t put more pressure on those who are dying or their loved ones to try to manufacture meaning at the end.

Our feelings were echoed recently by comedian Patton Oswalt who tragically lost his wife last year and who told NPR how pop culture gets it all wrong when it comes to grief: "Just look at super heroes, he says — their motivation is often rooted in loss that 'leads them to travel the world learning martial arts and doing CrossFit and getting really cut,' Oswalt says. 'And that's not been my experience.'"

Are you thinking that we should already know this about you, Hollywood? Is it obvious that you don't always accurately reflect reality? Fine, we don't always want you to. We want distraction and comedic relief, too. But other people don't seem to know the difference either, otherwise we wouldn't have gotten some of the questions about our plans for making a beach trip in our sister's final months. Our purpose in writing you is to encourage you to continue to entertain us, continue to create touching stories, but that you also consider the reality of end of life. The reality for most is that the insurmountable sickness and sadness involved does not allow much energy for adventures. And yet, there is meaning in the everyday moments with loved ones, and that is a lesson that has been lost.

‘Tis the season once again - time to celebrate our Irish heritage! We are reminded of our St. Patrick’s Day post last year, when we launched this website. We shared one of our favorite quotes:

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing

We are proud to announce that we are celebrating our 1 year anniversary of this website and blog! Although it has been a time consuming and sometimes difficult road, it has been incredibly rewarding. We are impressed with the real writers of the world who do this regularly and our respect for them has only grown. Just when we had moments of thinking that we couldn’t keep this up, a great idea would strike us in the middle of the night and we felt inspired again. We thank you for the support and as always, we thank our role model and big sister, Colleen, for constantly motivating us to work harder and to make an impact on the world just as she did.

Below is a recap of the year in images and quotes.

"Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them." - Our Motivation Behind Losing a Puzzle Piece

"After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings."- Maggie Gets It: A Place Like Home

Check out some highlights of these guest posts through their beautiful images: (Click on the image to link back to the blog post.)

"[Colleen's sisters] were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving." - A Mother's View of Sibling Caregivers

It has been quite a journey and we can't thank you enough for your support. What we have gained from this website and the many touching stories is difficult to put into words. Every day we are reminded of Colleen and the pain of having to go on with life without her does not go away, but this website has given us purpose and for that, we are thankful.

We are beyond excited to introduce our little sister, Kerry, as a guest blogger. As the youngest of five girls, Kerry has always shined and held her unique place in our big family; here, she yet again shows off her knowledge and insight as an architect. Our sister Colleen, in particular, would be proud to read Kerry's discussion of how the "built environment" can promote healing and Colleen would appreciate the unique form of care offered to cancer patients by Maggie's Centres in the UK.

Everyone knows Colleen was a champion of everyone around her, but she was especially protective and supportive of her sisters. When I showed more artistic than athletic promise as a young person, Colleen insisted that I take an art class outside of our basic grade school art program. I don’t remember how old I was or if she was in medical school or her residency at the time, but I do remember her driving me to the weekly class, rushing me from basketball practice at least a couple of times. Colleen barely played me when she coached my 7th grade basketball team, so her believing in my artistic abilities was HUGE. I knew she wouldn’t push me to do something just to be nice. Plus, taking an art class where I knew no one probably prepared me to go to a college where I knew no one, and major in architecture, of which I knew nothing.

So, it is with my background in architecture that I would like to relate to caring for Colleen at the end of her life. The built environment (a term Colleen loved to poke fun at-“What does that even mean Kerry??”) has the potential to either worsen discomfort or improve healing during times of crisis and its aftermath. Over the years we saw a spectrum of treatment facilities, in-patient and outpatient care rooms, hospital lobbies, and cafeterias. After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings.

A recent issue of The Architectural Review is dedicated to death, chronicling crematoriums, chapels, hospitals, memorials, and care centers that deal with end of life experiences. One such exemplar of a place of healing is the Maggie’s Centres. I’ve admired the architecture of these centers for a while, but it wasn’t until caring for Colleen in her last few months that I truly longed for something similar in the US, much less Michigan.

Who is Maggie?

Maggie Keswick Jencks was a writer, landscape designer, cancer patient, and wife of architectural theorist Charles Jencks. In the last few months of her life, she and her husband and cancer nurse outlined their ideas for a cancer care center that could contrast the banal and sterile atmosphere of the hospital where she was being treated. In the Metropolis Magazine article "Living with Cancer" Samuel Medina describes Maggie's feelings: “In such neglected, thoughtless spaces, she wrote, patients like herself were left to 'wilt' under the desiccating glare of fluorescent lights.”

What is a Maggie’s Centre?

Maggie’s Centres offer freeemotional, practical, and social support for cancer patients, as well as their friends and family. The first one opened in Edinburgh, followed by 19 more in various cities across the UK, one in Hong Kong, and a few more planned for the UK and other international cities. Each center is designed by a different architect, resulting in a collection of wildly distinct buildings, yet all adhere to the same prompt. They are located near, but remain separate from, institutional hospitals and treatment centers, and do not replace conventional cancer care.

Simply put by Dezeen's Amy Frearson: “it offers a non-clinical environment where anyone affected by cancer can stop by for advice or support.”

Richard Rogers' design for the West London location has won multiple design awards, most notably the 2009 RIBA Stirling Prize. Rogers Stirk Harbour + Partners in turn donated their winnings back to the cancer care center.

Photo by José Miguel Hernández Hernández

Maggie's Centre West London - Weekly Schedule

Maggie’s Centres are intentionally informal, residential in scale, and multi-purposed. If you want community, you can be comforted to find a group gardening class, other patients to chat with, yoga, and therapy sessions. If you would like a private place to think, you can find a library, a quiet garden, a cozy reading nook, or a massage. Worried about financials, sleeping, or your nutrition? You can even talk to experts in these fields at Maggie’s Centres. When we were scrambling to find a massage therapist with cancer patient experience, we could have used the resources of Maggie’s Centres. When we simply wanted to get out of the house without dealing with sad or confused looks, we definitely could have used a Maggie’s.

The most recently completed Maggie’s Centre in Manchester is summed up by its architects, Foster + Partners, this way: “The design of the Manchester centre aims to establish a domestic atmosphere in a garden setting and, appropriately, is first glimpsed at the end of a tree-lined street, a short walk from The Christie Hospital and its leading oncology unit.”

Architects Have Feelings Too

Sir Norman Foster, designer of the Manchester location has said: "I have first-hand experience of the distress of a cancer diagnosis and understand how important Maggie's Centres are as a retreat offering information, sanctuary and support."

Frank Gehry, designer of the Dundee and Hong Kong locations, described his pain in designing the first center outside the UK: "I was going through the loss of a daughter while I was designing the center," the architect said. "I think you sort of suck it up and hope to make something that is soothing and respectful and hopeful. There's always hope, it's not a dead end." The Hong Kong center features a garden designed by Maggie's daughter, Lily Jencks.

Maggie’s husband, Charles Jencks, has also emphasized the importance of caregivers:In Steve Rose's Guardian article, Maggie's Centres: can architecture cure cancer?, Jencks states “in a way, the carers are more important than the patients. Because if the carers are cared for, they turn up, they enjoy it and you create this virtuous circle, this mood in a Maggie's Centre which is quite amazing. So architecture helps do that because it looks after the carers."

Most people have some connection to cancer, including architects. By involving star architects, like Frank Gehry, celebrities like Benedict Cumberbatch, and powerhouses like Camilla the Duchess of Cornwall, Maggie’s Centres have been able to gain support, offer free services, and continue opening new centers in cities across the UK and internationally.

Yet the success of Maggie’s Centres can also be attributed to its sensible (small scale), sensitive (support not limited to a scheduled appointment slot), and inclusive (accessible for everyone affected by cancer) concept that fills a gap in healthcare today. Some hospitals have even “solicited the foundation’s services” that Maggie’s Centres offer, such is the case with the opening of the Glasgow location, near Gartnavel General Hospital. Of the foundation’s past year of visitors, “99% found the support [Maggie’s Centres] offer helpful.” The West London location alone gets almost 100 visitors a day.

What makes this foundation even more unusual is its commitment to designers who help realize these goals. Charles Jencksclaims the architecture is “risk taking” because it engages with a very real existential crisis. “To live is a great risk. Cancer patients go through this cycle of desperate fear, of deciding to die,” he says. “But those like Maggie risked to live. That’s the architecture in a way and what architects need to get into their building. And I think they have.” Jencks admits to using the famous architects as a way to gain funding, notice, and continued support. In return, the architects jump at the opportunity to be among the list of top designers, to contribute to this innovation in cancer care, and to grapple with an unusual design challenge. Richard Rogers describes the centres as "in a way monumental, and precious, like a church that isn’t a church, a gallery that is not in a museum, or a house that is not a home." Maggie's Centres are fairly unprecedented in building type, and wrapped up in the program requirements are complicated emotions of fear, mortality, healing, and hope. With these challenges, architects and the Maggie's Centre charity have set up a high risk, high reward cancer care system.

Consider Design, Consider Space as a Factor in Caregiving

+ What is wrong with the U.S.?

You might be thinking well, lots of things. You might be thinking, this could never happen here! But if they can do it, maybe we can push ourselves to do something similar, at any scale. Take this funny comment about Americans for example, and note Maggie's original goal:

‘To cut a long story short, Maggie and I decided to fight,’ Jencks says. ‘Empowering the patient became our strapline, although Maggie hated it because it’s too American. From her experience came the idea of setting up one little room. It gave her a focus she never had in her life.’

+ Creating a Sense of Home

Each Maggie’s Centre includes a kitchen, and a central dining table, which are often the heart of a home. Creating the feeling of home can be simple, and an important way of healing or providing comfort.

Colleen at Home

Yet Maggie’s Centres don’t give off a New Age vibe or make reference to Freud’s consulting couch; they are informal, like a home away from home. Jencks coined the term ‘kitchenism’ to describe the communal ambience of the centres, which allows patients and carers to come and go when they wish and simply gather around the kitchen table for a cup of tea in a proper mug, not a hospital-issued plastic cup. 

— Cate St Hill, "Piles of Hope- 20 Years of Maggie's Centres"

+ Views of Nature, Natural Light, Fresh Air

It was pretty chilly when Colleen was very sick, and we all remember how crazy we probably looked, propping up chairs by our front door and opening it to get some fresh air and sun. My favorite part of the various Maggie’s Centres is the range of landscape designs and the attention that goes into shaping garden views, providing different ways to experience the outdoors, and considering the effects of natural light.

Maggie gets it. She understood that while hospitals are vital in treating cancer, a supplemental support system rooted in a physical place is necessary. She understood that caregivers and families need support too. She understood that light and atmosphere are important aspects in healing. Colleen would have loved what Maggie Keswick Jencks has started in the UK with Maggie's Centres, and I only hope they keep growing, right into the US.

February is National Cancer Prevention Month, which we learned from this American Cancer Society cancer awareness calendar. Looking at this calendar, we found it interesting to see what types of cancers merit their own awareness month. The most common types of cancers are breast, lung, and prostate, with reportedly 225,000 new cases of breast cancer expected in 2017. This perhaps best known cancer - breast cancer - has its time in the spotlight in October when everything from airline napkins to NFL uniforms turns pink. Some evidence has led to books and opinion pieces questioning whether all the awareness leads to any real change in fighting the disease. To be honest, we didn’t have many charitable thoughts about breast cancer awareness in the October when we learned that our sister was dying of a rare form of cancer.

Colleen was unlucky not only in that her type of cancer was very rare, but also in that she was a rare patient. She was young - in her mid-20s - when she was first diagnosed. Her cancer appeared as a neuroendrocrine tumor (NET), which more typically occurs in a middle-aged man. It was a difficult and complex cancer to learn about as there are about 40 types of NETs and they can behave differently and appear in various organs. It seemed impossible to have a clear and tested way of treating her. She was also a special patient because she was a physician herself. She studied her cancer, learning about its disease process, symptoms, drugs that slowed its growth, and responses to treatment. She was her own champion for her health.

We often felt frustrated that more was not known about her cancer and her options. It sometimes felt like there were more resources available to the famous cancers. Researchtells us that there is a mismatch of funding among different types of cancer. To us it seemed unfair that not only did Colleen have an underfunded cancer in terms of research, she also lacked other types of support that may come from having a recognizable disease. We have heard a friend describe her cancer experience as wonderful, mentioning that she received an entire binder of resources for her cancer. Without recognition and more support, Colleen was never going to find a yoga class tailored to her specific cancer as our friend did. Upon studying the cancer awareness calendar, it turns out that there is, in fact, a Neuroendrocrine Tumor Day in November. Who knew?

But knowing that there was an awareness day for her cancer wouldn’t have changed much for us. We didn’t necessarily want a special colored ribbon unless it would have effected real change in Colleen’s outcome. The contrast of beating cancer versus dying of it is a big one. The awareness campaigns focus on those living with it or surviving and, obviously, they want to stay positive. Their goals are fundraising for research, support, and more awareness campaigning. Those who are losing their battle to the disease may feel left behind.

Why do we dedicate certain days and months to certain types of cancer and not others, anyways? There are so many kinds of cancer, and they all deserve our attention. We worry that the very rare ones will be left out, which doesn’t seem right. As this article in Chicago Health argues, “lesser-known cancers deserve equal attention so that people can be better informed about symptoms and new developments in diagnosis and treatments. And with more attention will hopefully come additional financial support necessary for research to improve survival rates.”

Focusing on cancer prevention this month, rather than awareness of a particular kind, seems much more inclusive and more productive. In fact, the American Institute for Cancer Research says that eating healthy, staying active and lean are all ways that you can avoid one third of cancers. But even the cancer prevention focus leaves out those who are currently fighting the disease.

Unfortunately, people continue to die of cancer at staggering numbers. We should focus on continuing to support all kinds of cancers and all patients - no matter their age, race, gender, or stage of disease. Whether you talk about awareness or prevention, the commonality is that cancer is a beast and it affects people in terrible ways. It may help just by being “aware” that the colored ribbons alone don’t make the pain and suffering go away.

We were enthralled with this NY Times article- our children were ignored and things got messy while we read it start to finish. B.J. Miller is one inspirational man - a triple amputee who went on to become a physician focused on changing palliative care. His goal is to “de-pathologize death.” What is a good death? How do you judge it? What matters in the end? Such important questions, and we are so glad B.J. is asking them.

Another recent NY Times article asks "Who Will Care for the Caregivers?" and states that "we — as doctors, employers, friends and extended family — aren’t doing enough to help them." It covers so many points we agree with! Family caregivers aren't always included in decisions about patient care but are expected to perform complex medical tasks at home with little training. And as we've said, policies that increase paid leave and provide flexible work schedules would help support family caregivers.

Anne Tumlinson ofDaughterhood highlights one of our favorite topics: sibling caregivers, and we were lucky enough to be mentioned in the post. She shares tips for avoiding conflict and building better sibling relationships while caring for aging parents.

This beautiful and honest story from Zach Sobiech’s sister, Alli, is worth a read. We relate to her story of sibling loss, anxiety and grief, and efforts to help her child know his deceased uncle.

This radio show via KALW in San Francisco is part of a series covering end of life issues. Palliative care training is now offered in almost all medical school training, but unfortunately there is a shortage of doctors specializing in this. Dr. Jessica Zitter is interviewed, an ICU physician who specializes in palliative care, and talks about her personal practice “resisting the urge to do more” and asking her team to think about “how is this really going to help?”

We are happy to introduce our guest blogger, Nicole Godfrey, from Mesothelioma Guide. She draws our attention to a rare form of cancer, mesothelioma, helping us understand what it is, that young adults are affected, and the challenges of caring for a young patient. Nicole is a writer and a community outreach team member at Mesothelioma Guide. When she isn’t working, she enjoys reading graphic novels and writing fiction. She also is an avid theme park enthusiast.

Mesothelioma is a rare but serious type of cancer. It usually occurs in the lining around the lungs or abdomen. When a confirmed diagnosis occurs, life changes not only for the patient, but it changes for their friends and loved ones as well.

Young people can often go overlooked in the mesothelioma community because mesothelioma usually occurs in people over 60. However, young adults are still affected. Some young adults find themselves filling the role of caretaker for a family member with mesothelioma. Other young adults find themselves unexpectedly diagnosed with mesothelioma.

The Cause of Mesothelioma

Mesothelioma is caused by exposure to asbestos. Asbestos fibers can float in the air as dust. When they are breathed in or swallowed, they can damage cells and eventually cause tumors to form. Asbestos is a mineral that was used in many products because it is extremely durable and a good heat conductor.

Most people were exposed occupationally, such as factory workers, shipbuilders, military veterans or insulation manufacturers. Unknowingly, many family members of people with asbestos related jobs, were also exposed to asbestos through secondary exposure. Often workers came home and still had asbestos fibers and dust on their clothing. Family members could breathe in asbestos through contact with the worker’s clothes.

Unexpected Diagnosis

The only way a person can get mesothelioma is by being exposed to asbestos. Mesothelioma takes about 20 to 50 years to develop after exposure to asbestos. This latency period can cause diagnosis to come unexpectedly, especially for younger patients who were exposed to asbestos as children without knowing.

In the United States there are approximately 2,000 to 3,000 cases of mesothelioma diagnosed each year. When a person is diagnosed, it often takes both them and their loved ones by surprise.

Due to its rarity, many doctors don’t have experience with diagnosing and treating mesothelioma. Under many circumstances, patients are misdiagnosed. They can be diagnosed as having a cold, the flu, or pneumonia. Patients are even sometimes diagnosed as having other types of cancer.

Some common mesothelioma symptoms are

Chest pain

Difficulty breathing

Dry cough

Weight loss

When a person is officially diagnosed, sometimes it is too late and their treatment options are limited. This gives many individuals less time to cope and understand what is happening, before they lose their loved one.

Being Diagnosed Young

The average age of someone being diagnosed with mesothelioma is over the age of 60. However, there are cases where someone can be diagnosed in their 20s or 30s.

Jodi Page and Alexis Kidd are two survivors who are featured on Mesothelioma Guide’s website. They both were diagnosed at an uncommonly young age.

Jodi was diagnosed with malignant pleural mesothelioma when she was only 26 years old. She was given 19 months to live. With her family caring for her, including her dad, aunt, and sister, she beat the odds and is now a 16-year survivor.

Alexis was diagnosed with peritoneal mesothelioma when she was 37 years old. She was given 6 months to live. With her husband supporting her, she is now a 10-year survivor.

By seeking mesothelioma specialists, treatments, and having support and care from loved ones, many patients are beating the odds of their original prognosis.

Having Support

A recent study revealed that the average age for a caregiver is 49.2 years old. However, 48% of caregivers in the United States are between the ages of 18 and 49.

A mesothelioma caregiver might feel like they are overwhelmed with many new responsibilities, such as feeding and bathing their loved one. They also may struggle with becoming their loved one’s healthcare or financial advocate.

In times of uncertainty patients need a strong support system. Mesothelioma caregivers also need support to get them through times where they feel like their world is being turned upside down.

It is always important for both mesothelioma patients and caregivers to know that they are not alone. There are mesothelioma support groups that both patients and their loved ones can get involved in. These groups can be found in their local community, online, or even by phone.

If you or someone close to you has been diagnosed with mesothelioma, you may find yourself having a lot of questions. For help seeking your answers, you can always contact Mesothelioma Guide.

Obviously, there are a lot of serious issues facing our nation this election season. As we head into the heat of the Presidential race, we thought it would interesting to look at what the candidates are saying about one issue that is important to us - family caregiving. Turns out, it’s a not a hot topic for them.

You may be thinking- there are more pressing issues such as national security at the forefront of the discussions, so why do we care about this issue? As we’ve stated before, family caregiving may affect all of us at some point, making it a topic of importance for employers and politicians. According to the AARP Executive Summary of Caregiving, there are about 43.5 million unpaid caregivers in America and the majority (85%) provide care to a family member. They report emotional and financial strain. Among the employed caregivers (not self-employed), only about half report flexible work hours or paid sick days to help with their caregiving responsibilities. Many caregivers are overwhelmed and some have to leave work in order to care for a family member. The burden of caregiving can be tremendous to the person involved, but can eventually affect the workforce. Politicians can help by adding more resources and tax breaks to help them in their time of crisis. We wanted to learn more about where the candidates stand, so we did some digging and found a few articles to help us.

Although there is a growing need, with an increasing gap in the ratio of potential family caregivers for our aging population, this Washington Post article from a year ago found that most presidential candidates in the primary season were silent on the topic, with the exception of Hillary Clinton who has called for more support for family caregivers.

More recently, in the first few minutes of the debate between Hillary Clinton and Donald Trump on September 26, as the debate transcript shows, Clinton stated: "I want us to do more to support people who are struggling to balance family and work. I’ve heard from so many of you about the difficult choices you face and the stresses that you’re under. So let’s have paid family leave, earned sick days. Let’s be sure we have affordable child care and debt-free college.” While not exactly focused on family caregivers, at least she recognizes the struggle. Trump mentioned child care once but did not address the topic.

On September 13, the National Academies of Sciences, Engineering and Medicine released a report, Families Caring for an Aging America, that outlines challenges family caregivers currently face and makes recommendations for is needed in the future. As summarized by Next Avenue in this Forbes article, the report calls on the next president’s administration to “take steps to address the health, economic and social issues facing family caregivers of older Americans.” It also urges the federal government to create a National Family Caregiver Strategy recognizing the vital role family caregivers play in the health of older Americans.

As another Forbes article explains, Hillary Clinton has more detailed plans that would affect family caregivers: “Clinton said she would work to increase Social Security benefits for people who take time off from paying jobs for family caregiving duties. She also advocates a new tax break for individuals caring for aging parents or grandparents (though not spouses). In addition, Clinton favors greatly increasing the amount the federal government spends on its Lifespan Respite Care program, which provides money to states to give family caregivers a temporary break.” These plans are indeed listed at the bottom of this page from her campaign website.

There has been recent focus and discussion of paid family leave policies by both candidates, which is related but not quite the same as addressing the needs of family caregivers. Clinton’s plan is to provide up to 12 weeks of paid family and medical leave to care for a new child or a seriously ill family member, with at least two-thirds of current wages funded by tax reforms. The definition of “family member” is not clear, but is unlikely to include siblings, similar to existing law under the Family Medical Leave Act (FMLA). Trump’s proposal is even more restrictive with just six weeks of paid leave for mothers only and newborn child care only using existing unemployment insurance programs when employers do not provide the benefit. This article fact checks candidate’s statements on these topics, and summarizes their family leave proposals in the following chart.

Although it has not been a focus this election season so far, we are hopeful that the current conversation about paid family leave policies can be expanded to consider the broader needs of family caregivers, including paid leave and flexible work arrangements as well as other types of support and training. We also believe that the definition of family caregiver should be expanded to include siblings and others who provide unpaid care to family and friends. Otherwise, unfortunately, even if improved policies for paid leave or other support are implemented for the "typical caregiver", there are many of us that will be left in the same position and excluded from coverage under FMLA or similar laws. Two more presidential debates are coming up on October 9 and October 19, so we'll be watching to see if the candidates share any more details about their plans to support family caregivers.

As we discussed last week, our sister Colleen's decision to continue certain treatments meant she was not yet a hospice candidate and made it difficult to determine when she could start hospice. This eventually led to a great deal of stress, uncertainty, and frustration. For us, the stress mounted as her symptoms worsened with time, and meanwhile she continued to take her chemotherapy drug. We felt helpless and anxious because we knew that if something acutely happened, she would not want us to call 911 or summon an ambulance. She expressed to each of us on many occasions that she did want to go back to a hospital, ever, and she would not want life-sustaining interventions. Yet she was not officially a hospice patient, so we would not be able to obtain their guidance and support in a crisis, either.

Why was this burden to determine the “right time” to enroll in hospice left up to us family members? As this study points out, doctors are supposed to talk about hospice with patients who are expected to live less than a year, but overall only 25% would discuss hospice with a patient who only had 4 to 6 months to live. Some doctors admit that they would wait for the family to bring up the topic of hospice.

In our case, the conversation about hospice was brought up once initially at the point that Colleen was told there was no further treatment options. It was never again mentioned by her primary medical team after she decided to continue to take medication. But, obviously, things were going to change in the weeks ahead and the end-of-life and hospice conversations needed to keep happening. We wasted weeks trying to figure out how to have these conversations. We are not implying that we were looking forward to the end, but we painfully watched her condition change drastically, knowing that we wanted the appropriate steps in place as she was dying. This led to mounting stress as we knew the end was coming whether we wanted it to or not, and yet we felt increasingly unprepared. We had whispered debates out of her earshot about how and when to bring "it" (hospice enrollment) up. We were afraid that she would feel we were pressuring her to give up… to hurry up and die.

We believe that initiating the conversation about whether it was time to enroll in hospice would have been best done by her physicians. Colleen was strong willed and felt she knew best - and almost always she did - but she would have listened to an outsider more readily. Of course, discussing dying is hard and we all struggle with it, but it is much harder for the family to do it with their loved one than for a doctor with their patient. The medical team seems to be in the best position to get it done effectively and in a timely manner. They also (hopefully) have the appropriate information about what palliative care provides and what services hospice can offer, so that they can make the case to the patient and their family that enrolling in hospice is not “giving up” or hastening death, but putting a unique type of team in place to support the patient and their family during the inevitable.

We understand barriers to enrolling in hospice and have read several articles about this: physicians wanting to provide hope, treatment preventing hospice enrollment, patient perspectives, denial and unrealistic expectations for a miracle. We experienced each of these barriers to some degree, but we wanted the support from hospice and feel that we would have benefited greatly had we enrolled sooner. We agree with the mission of palliative care and all that hospice can offer: according to the National Hospice and Palliative Care Organization, that “each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Unfortunately, we could not figure out how to overcome some of the barriers. We wanted hospice support but missed an opportunity to get it when we needed it. It is a common problem that people are unable to have the necessary conversations sooner. Although we felt that we talked realistically and planned ahead, we were frustrated to nonetheless be among those struggling with the appropriate way to enter and navigate the end-of-life stage.

Family members report dissatisfaction with their hospice experience when they are referred to hospice too late, as reported in this response letter, Family Assessment of Quality of Care in the Last Month of Life. Early access to palliative care services is one of the main goals to improve the quality of care perceived by the family, but achieving that goal will require changes in resources and culture. We personally agree with this research - without hospice or other formal palliative care coordination, we had lower confidence in caring for Colleen, unmet needs, and more concerns about coordination of care. We were present and caring for Colleen in her final 72 hours of life without any representative from hospice helping us. We luckily had a binder of information that hospice provided, which explained the stages and symptoms of dying, and that we referenced often. We wanted to be together privately as a family and are not suggesting that we wanted a hospice member watching over us, but we would have felt more at ease had we been educated and prepared by the hospice team and perhaps had received at least one in-person visit.

To have received the proper training we wanted, it likely would have required more time enrolled in hospice. Sadly, our story is not unique and many patients (35%) are enrolled in hospice less than 7 days, and many more for less than 30 days (62%), according to data from the Medicare and Medicaid services. As we stated in our response letter to the study by Drs. Teno and Plotzke in JAMA Internal Medicine, we are encouraged that Medicare and Medicaid plan to change payment policies to encourage more hospice visits and look forward to further palliative care and hospice improvements. There is much more work to do to improve end of life care. As Drs. Talebreza and Widera stated in reply to our letter, “In hospice care, simply showing up is not enough, and we only have 1 opportunity to get it right.”

When we received Colleen’s bad news – that there were no further treatment options - and tried to figure out what to do next, she wasn’t bedridden or very frail at all. She had a few symptoms such as fatigue, nausea, and fluid retention, but she was still working, could walk well, had full mental capacity, and was still functioning completely independently. To go from being together on a fun family vacation a few months prior to placing our sister in hospice care seemed unreal and drastic. None of us were ready for this. As a physician, Colleen was not ready to give up taking her medication regimen at the time. She did not feel like a dying person. She was young and had a child. She simply was not used to losing and she was not willing to just sit at home doing nothing. She decided initially to continue taking her oral chemotherapy agent in hopes of buying some time, delaying the cancer’s victory. We agreed with her decision, but later learned that this prevented her from being approved to start hospice, as taking chemotherapy is an exclusion to enrolling in certain hospice plans.

The role of chemotherapy at the end of life is a multifaceted issue involving different viewpoints of patients and oncologists and varying goals of care. Research has shown that the understanding of goals is not necessarily shared amongst patients and doctors, and end stage cancer patients will often accept little benefit from chemotherapy. Specifically, they will take toxic chemotherapy with a 1% chance of cure, whereas the medical team prefers a 50% chance of cure. According to the National Cancer Institute: “A consistent finding over the last two decades is that patients with advanced cancer are typically overly optimistic about their life expectancies…” Younger patients and those with mildly toxic chemotherapy regimens had greater preference for treatment, which was the case with Colleen. Initially, she had such minimal effects from her chemotherapy that she went to a family wedding, dancing like a rock star at the after-party until 1am. In addition, part of oncologists’ preference to allow patients to continue treatment is to prevent them from losing hope and control. All of these issues - young age, patient optimism, personal beliefs, false reassurance by oncologists, and lack of alternatives given to patients - contribute to an ambiguous place of not knowing when to say enough is enough.

Many patients who are taking chemotherapy at the end of their life are seeking to prolong life or control symptoms rather than looking for a cure. It is a difficult situation for the medical provider to allow the patient to continue chemotherapy if the benefits are very small; we understand that they could be put into a difficult and unethical spot. But one article, The Role of Chemotherapy at the End of Life, makes an invaluable point that the providers need to focus more on what the treatment goals are. They even have a table of “things to do or say” to advanced cancer patients. We like the entire table of suggestions, but a few that stuck out to us were:

Ask patients their goals.

Define “response” and “cure.” Patients can mistake a 20% chance of response with a 20% chance of cure.

Write down a list of benefits of and adverse effects from the chemotherapy.

How much time – worst, medium, and best cases – is each treatment likely to buy?

Given the treatment agents involved, what are the likely adverse effects and their characteristics, and what will they realistically mean to the patient’s capacity to enjoy remaining life?

Will the struggle be worth the benefit?

We understood Colleen’s goals and her reasoning and fully supported her decision to extend her time here. She was not looking for a miracle or running from reality. And when she told her physician that she wanted to keep taking the chemotherapy drug, he didn’t say no and seemed to agree with her reasoning. But perhaps we were all given false hope because there was no clear answer. The adverse effects of her chemotherapy seemed minimal, and at first it seemed harmless to continue it. But, in retrospect, it caused us great headache as it prevented us from receiving the much needed guidance from a hospice team as her condition worsened. The initial estimate of her time left without more treatment ended up being pretty accurate; therefore, we aren’t sure whether the chemotherapy significantly extended her life, which was the point of continuing it. Although her goals were clear to us, her decision ultimately prevented us from having someone in charge of her care and helping us navigate her increasing symptoms.

We now refer to this phase of caring for her as the “grey zone”- no team or coordinator in charge, no routinely scheduled doctor visits, very few services in place to help her and our family. Colleen was cut loose in many ways once she received a terminal diagnosis. There was nothing much else that her medical oncology team could do for her, and then it became unclear who was in control and responsible for her care. We could order equipment - that was the home care service available to us prior to hospice enrollment. It was solely up to us to acknowledge and treat new symptoms and keep her comfortable. We ended up privately sourcing things that we found useful and that helped her to live comfortably, such as hiring a massage therapist, researching exercises that she could safely do, and providing the right nutrition. We purchased other sources of comfort, such as heating pads, aromatherapy, and compression stockings. At this time, we were her palliative care team and we did it with pride, yet we now realize that more help could have made this a more positive experience.

If we were to do this over, we would be more proactive in asking for the resources that we deserved. We would have demanded more guidance from the medical teams. We know that there are better ways to do this and that family caregivers do not need such large responsibilities placed on them when they are also struggling emotionally with losing a loved one. As Drs. Teno and Plotke stated in response to our letter published in JAMA Internal Medicine, “These caregivers provide care at a time when they are faced with one of the most difficult events in their life.”

Perhaps if the “rules” for hospice enrollment were more flexible, a patient like Colleen could continue a treatment such as chemotherapy, which is typically used to prolong life, but solely for palliative reasons. In that case, the option to enroll in hospice sooner would be open and there would be more support in place for the patient and the family. In the alternative (or better yet, in addition), health systems would invest in more robust resources provided by home care services that are meant to support patients recovering or taking respite at home, in order to provide the bridge that is missing before hospice care. Also, to lessen the burden, the medical teams would facilitate the difficult conversations and help to enroll patients who are worsening at the end of their life. We will discuss this final idea further next week. Read on to Part 2 here.

We started this website just four months ago, on March 17, 2016. Since then, we have been connected with great people and groups and heard from many different perspectives in caregiving and grief. As we pause to take stock, we realize that we have personally benefited greatly from this website and find it rewarding to maintain. Some have wondered why we are doing this and what our goals are, so in addition to what we explained under “About Puzzle Pieces,” we wanted to open up more about our mission behind this all.

We are aiming to give other young adults and siblings the stories and resources that we were looking for when going through our acute caregiving experience. When faced with the reality that there were no more treatment options for Colleen, we never found stories, humor, and resources focused on siblings going through such a sad and difficult time. We aren’t doing this as a “tell all” for us. We were quite anxious about sharing our story, opening up personally, and drawing attention to ourselves, but felt that our mission to help other young adults and siblings faced with similar challenges trumped these fears. In the darkest times, we didn’t feel that we could relate to other peers who were blissfully planning their lives. We simply want others to not feel isolated like we did. Young caregivers and siblings are amazing and deserve attention in these areas of caregiving and grieving.

We also want to share not just our experience, but advice and perspectives from others by featuring guest bloggers. And we are learning from them, too, as we continue to navigate our grief. So far, we have learned about a mother's perspective on watching her children become caregivers and seeing that they can provide comfort, great care, and respite to the main caregivers. We have learned that music can begin the healing process, that accepting death is necessary to face reality and learn to live with it, that telling the truth about your relationship with your sibling and remembering the hard parts can help you acknowledge their life and fully grieve, and that patients experience the stages of grief as well. We have also heard from experts about how ambiguous loss may affect young caregivers and how to talk to children about serious illness or death.

You may think that we have a team of writers and interns but, unfortunately, it is just the two of us, scrambling to keep up with the self-imposed Thursday deadlines while ignoring the growing mounds of laundry and weeds in the yard, the dinners that just won’t make themselves, and the dogs and children that demand walks and attention. Although this endeavor may be costing us in some ways, it is paying us in connections, motivation, and knowledge. We aren't generating any money from this site and we have no sponsors supporting us, but that's not why we are doing this anyways. The websites, organizations, or products on our Resources page or in blog posts about comforting products and how to help a friend are included only because they truly made a difference to us or we wish we had found them sooner. In addition, we are so grateful to Working Daughter for interviewing us, to Henry Ford Health System for listing our website on their new family caregiver resources webpage under young adult and end of life resources, to our high school alumnae newsletter, the Marian Monitor, for highlighting our website, and to JAMA for publishing our perspective on hospice care, all of which have done so free of charge and free of compensation, but helped us reach an even larger audience.

It’s not about the money, money, money....

— Jessie J Lyrics to "Price Tag"

Our motivation for this website and this community has always been Colleen. She accomplished a great deal in her 39 years while also battling cancer. Every day, she motivates us to try harder, keep going, and make the most of our 24 hours in the day. The least we could do is be even half as ambitious and brave as she was and highlight areas that we feel are in need of attention and support. Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them.

We have learned a few things the hard way in these past few years. We learned that some problems in life are too big to solve. Even sisters can’t fix problems like cancer. It has been difficult to come to terms with, but sometimes the best thing that we can do for a sibling is not to try to fix it all but learn to just be present. We were forced to learn to “just be” with Colleen, to support her, to love her and that was all she needed in the end. If we made stickers like the the popular Keep Calm campaign, ours would say, “Keep Calm and Be Sisters.”

We are so grateful for some expert advice on how to talk to a child about serious illness or death, something that no one ever wants to have to do. When we were faced with this situation, we personally felt overwhelmed and bewildered by this task. This week, Dr. Jennifer DeGroot Hanawalt, a clinical psychologist, provides practical, real-life suggestions of what to do and what to say to children with an ill or dying relative.

You may be a parent, or helping to care for your sibling’s children, or you may even find yourself with increasing responsibility for or eventual guardianship of your sibling’s children. Here are some thoughts on how to talk to your children, or your sibling’s children, about serious illness and death.

First, talk to children about serious illness and (if or when appropriate) death. It is essential to talk to children about what is going on. The amount of information and level of detail you provide will depend on the age and maturity of the child; however, it is important to be honest. Even babies will pick up on stress and sadness in their caregivers. Toddlers are not too young to be told that someone is sick and that you, the adults around them, the doctors and nurses, etc., are doing everything they can to take care of them and help them feel better. I have spoken to many people who remember overhearing their parents and other adults speak in hushed voices about a parent’s serious illness. When children are left completely out of the discussion, or overhear partial information, what they imagine or fill in can be worse than reality. Children may think they are to blame, expect the worst, worry about what will happen to themselves, even lose trust in the adults around them.

Tell them what you feel they should know about the situation, how you expect it will affect them, and who will help take care of them (while you are busy caring for your sibling or while their parent is ill). Whenever possible, let them know ahead of time about any changes to their routine. Encourage them to ask questions and to talk to you about what is happening when they want to.

Some children will not be able or ready to talk about their feelings. It is still important for them to be able to express their fear, sadness, distress, anger, etc. One way to allow this expression is through play. While playing with dolls, animals, dinosaurs, knights, or dragons, children can work though and express many emotions and thoughts that they are not verbalizing. Set up opportunities for them to play with you, and try (because you have nothing else to do!) to be present in the play with them for a bit. It can be a great opportunity to connect with them and help them to cope. Also, if you set up some sort of structure with toy figures on a rug with pillows, you can lay on the floor next to the playing child. It is almost like rest.

Another way to help children to express themselves is though drawing. Provide a blank piece of paper and some colored pencils, crayons or markers and ask them to draw their feelings. If you can, sit with them and also draw or color. This can be considered relaxation for yourself, which you need as a caregiver, so now you are multitasking!

Finally, it can be helpful to describe your feelings to model communication and labeling emotions. The child is probably not a licensed therapist, however, so keep it brief and light ("I feel sad that Aunt May is ill, but am glad she has so many people taking good care of her").

We agree, as the article stated, that all employers should want a “harder worker, and a happier workforce,” but it’s surprising how many don’t seem to know how to obtain it. The article and the report make the point that this caregiving problem will become personal to us all at some point in our careers. We likely can’t escape caregiving; therefore, we believe employers need to tackle it as an issue with importance similar to providing insurance to employees. How can we provide the best care to our family members if we don't feel that our jobs are secure? And how can anyone be expected to choose between their job and caring for a loved one?

The article states: “A caregiver can be someone tending to a sick child, a spouse or partner, or an aging parent.” We’d like to add that there are other types of family caregivers, specifically sibling caregivers, which was our personal experience. As two sisters in our 30s and working moms, we helped care for our oldest sister when she had end-stage cancer and subsequently died at the young age of 39. More and more of us, including young adults, have caregiving responsibilities (as noted in the article, in 2014, 25% of caregivers were millennials). However, during our experience caring for our sister, we often felt overlooked and discounted not only as young adult caregivers of a young adult patient but also as mere siblings.

We looked into applying for Family and Medical Leave Act (FMLA) leave in order to have the peace of mind of job protection while caring for our sister. One of us was even encouraged to apply, only to be denied coverage, and we were shocked to learn that FMLA does not apply to siblings. Fortunately, we had fairly flexible work schedules and supportive work colleagues and did not face any outright employment discrimination. However, our sister’s illness significantly affected our daily lives and we can only imagine how others manage to juggle it all. Although no federal law explicitly protects employees from FRD, and protection for sibling caregivers is particularly lacking, we believe siblings matter and have unique roles to play in caregiving. The FMLA should be amended to cover siblings, and another federal statute enacted to protect all family caregivers from FRD.

The report from The Center for WorkLife Law is eye-opening. For example, the number of lawsuits relating to caregiving for aging relatives has grown more than 650% over the previous decade and is expected to continue to rise. The report contains examples of cases where employees were disciplined or fired for absences caused by caring for ill or dying family members, even when they were covered by FMLA, and of the terrible things that insensitive employers said to them. Importantly, the suggested best practices to prevent FRD include not just training and anti-discrimination policies, but practical solutions like “nonstigmatized flexible work programs.” Young adult caregivers, in particular, need such programs because they are often just starting out in their careers at the time they take on a caregiving role, and without increased awareness and nonstigmatized programs, they do not have the seniority or clout to demand the flexibility and reasonable accommodations needed to care for their loved ones.

Employers, employees, medical professionals, patients, and their families need to become more aware of the challenges, rights and responsibilities of caregivers, and come up with solutions. This will affect us all, and we, as a society, can do this better.

If it feels like everyone is talking about Paul Kalanithi’s book, When Breath Becomes Air, it’s because they are. In fact, there are several recent books and articles about the hot topic of death as this New York Magazine article points out. It is interesting that books about mortality - including Paul’s book, Michael Kinsley's Old Age, and Atul Gawande’s Being Mortal - made it to the New York Times’ bestseller list. We have a particular interest in these topics after our sister’s death from cancer, but, surprisingly, it looks like we are not alone even among death-phobic Americans. And here we almost named this website (sarcastically) “another f***ing blog about death.” We are so relieved. We don’t want to be the ones known as “the weird sisters that always talk about death.” #theyarealwayssad #alwaystalkingaboutdeath

Maybe a culture change is happening and Americans are more ready to face difficult topics, such as end of life, death, and grief. As the article notes, 90% of Americans in the Conversations Project survey felt that end of life discussions are important... yet just 27% of them went through with it. We completely agree that these are important discussions and hope that some are even happening ahead of time, to prevent undue stress when someone is dying. But if we’re not ready to truly tackle these issues, at least we are reading about them. We get that reading about death for leisure seems odd. Why would we be drawn to dark subject matters to fill our precious “down time?” We aren’t suggesting that you focus on these sad themes while on your beach vacation, but signs pointing to a shift away from a “death-avoidant culture” and towards an increased focus on end of life care are positive and we encourage it.

When our sister was dying, we found it incredibly difficult to have the necessary conversations and did not find much guidance regarding how best to handle it. Even doctors have a hard time giving their patients a straightforward prognosis and helping them prepare for death. Atul Gawande has brought to light the areas that are lacking as we approach death. Although Being Mortal is focused on aging and senior living, many of his ideas resonated with us, especially his call for medical professionals to focus on well-being, figure out what the patient values and how they want to live, nurture their independence, and not just fight and cure disease.

After our sister learned that there was no further treatment available to fight her cancer, we discovered that many people could not wrap their minds around a young person’s mortality. People continued to tell her and us that she was so strong, that they knew she could beat it. Paul Kalanithi’s When Breath Becomes Air provides an account of a young person coming to terms with death. You can understand his confusion - “what tense am I living in now?” - and his reaction to people making plans at a college reunion to see each other at the next one - “it seemed rude to respond with ‘Well… probably not.’” Like our sister, he was a doctor and a patient. His doctor gave him one of the greatest gifts we can imagine for someone like Paul and like our sister - she told him she was happy to have his input but also happy to just be the doctor. As Paul explained: “While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn’t help me as a patient…. Like my own patients, I had to face my mortality and try to understand what made my life worth living.”

When our sister died, we were shocked by how many people were at a loss forwhat to sayorhow to help us. This seems especially true for us young adults who may not have much experience with death and grief or have not really had a reason to stop and examine mortality. Perhaps at our young age, we feel invincible or feel that we are far away from dying. But as Paul’s wife Lucy wrote in the epilogue to his book: “[Paul] wanted to help people understand death and face their mortality. Dying in one’s fourth decade is unusual now, but dying is not.” The point of being more comfortable with death and mortality is to accept the inevitable in hopes of living a better life now. We also felt more sensitive to these subjects after caring for our sister and being present for her death. After our experience, it was jarring to witness conversations where people joked about terminal illness or death - friends in their 30s and 40s being dramatic about their minor ailments. We too frequently take for granted that others around us may be grieving. We also take for granted how valuable it is to LIVE life and to feel good.

For us, reading these books is a little like reliving the tragedy that we just experienced. We can only read them in small doses, but we are so impressed that these authors were able to draw attention to tragic yet important topics in such beautiful ways. We will all experience death and grief in our lives - and also perhaps caring for someone at the end of their life. You can face it head on, figure out how to deal with it, and some day it will change you and teach you more than you could ever imagine. Paul and Lucy Kalanithi opened up and shared genuine and brilliant thoughts on the meaning of life and death and in return, we are all benefiting. Paul's most powerful and breathtaking advice on life's meaning is directed at his infant daughter:

“When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.”

Nutrition is a huge part of providing strength, recovery, staying well, and getting well for any patient. For cancer patients, nutrition is an important part of fighting the disease. Both the illness and the treatments affect a cancer patient’s appetite and body’s ability to use nutrients. There is an increasing focus on nutrition in cancer treatment. For example, see the American Cancer Society's resource page about nutrition for people with cancer and the National Institute of Health (NIH) National Cancer Institute's pages summarizing nutrition in cancer careand nutrition therapy in cancer care, which helps to find and treat nutrition problems early or seeks to improve quality of life for patients with advanced cancer.

“Anti-Cancer” author David Servan-Schreiber felt that healthy eating and stress reducing activities were the new lifestyle wave for fighting cancer. His ideas were groundbreaking and focused on alternative and adjunct cancer treatments. He proposed a science based anti-cancer diet as a supplement to standard treatment. He did not recommend food therapy as the only answer to fighting cancer, but proposed interesting ideas focused on healthy choices. Sugars and stress are fuel for cancer cells, according to his research. We were drawn to his out of the box thinking and proposal to blend traditional and alternative medicine. His methods couldn’t make a patient like our sister Colleen feel any worse or be detrimental. Similar to David, Colleen was interested in holistic and wellness techniques, such as exercise, meditation, and nutrition, as ways to help her feel calm and well. Although David’s ideas were not “life saving” when fighting his own cancer, in that it did not prevent his ultimate death, he likely enjoyed the benefits of meditation, yoga, and eating foods that resulted in feeling well; these benefits are beyond worthwhile to a patient who no longer has traditional treatment options.

But for many cancer patients, food becomes a fight and the thing that turns them off the most. Colleen normally loved to eat and to cook, as we all did. We loved talking about food, sharing recipes, and sharing meals. The battle was about much more than food. Meals and cooking were things that we bonded over and brought us together, yet cancer changed this. When her increasing symptoms like dry mouth, differing tastes, and nausea took away her enjoyment of food, it was devastating for us to watch. We racked our brains trying to come up with ideas for food and drink. We became secretly obsessed about it, without letting her in on this because it was tiresome for her to talk incessantly about food and meal planning, which could make food even more unappetizing.

Unfortunately, we also faced a gap in care between active treatment and hospice enrollment when we had no one to ask for professional nutrition advice for her particular condition. We tried many different food options, privately researched nutrition, solicited advice from a nutritionist-friend, and studied food labels. We discovered that certain cereals are surprisingly high in protein; for example, Kashi Go Lean has 12 grams of protein per serving, and often cereal was palatable when other foods were not.

When Colleen had advanced cancer, she stayed away from carbonated beverages, caffeine, smoothies, and milk products. She especially had an aversion to nutrition shakes like Ensure. We were limited in our options for easy vehicles of vitamins, protein, and hydration, but we were determined to figure out something for her to drink other than water. She was often thirsty but got sick of drinking just water all of the time. After some experimenting and a few flops, we created some of her favorite and easy drinks - caffeine-free teas and infused waters. We even found a juice that she enjoyed if it was watered down. Here are some of our drink concoctions:

If we could provide a few moments of happiness through good food, we were determined to at least try. Whenever Colleen was craving a certain thing, we made sure to find it, cook it, do whatever it took to serve her something that she enjoyed. As Colleen’s tastes changed, so did our cooking skills. Eventually, few things appealed to Colleen anymore. Although we still wanted her to enjoy eating, we eventually realized that we should stop stressing about cooking for everyone. Sometimes no one felt like eating dinner, or everyone but Colleen would eat dinner, so we focused on meals that were easy or could be prepared ahead of time. Crock pot recipes that can be started early in the day and then forgotten about until someone gets hungry are the ideal. Click below for some of our favorite recipes.

It is hard to watch a loved one lose their appetite or become unable to eat. It is one of the many impossible things to accept, but you have to somehow come to terms with it. You can’t force them to eat, even though it would make you feel better to see them enjoy a meal and feel satisfied. Food is love and we love eating. But sometimes there are times in life and things like cancer that take over meal planning and family dinners together. We understand the desire to nurture your loved ones through food, and nutrition is important, but it can become a difficult area to navigate. Give yourself a break and don’t aim for gourmet meals. You can’t possibly be a super caregiver AND Martha Stewart at the same time.